swilkinson

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  1. swilkinson
    I have gone back to photo scanning to make the post-funeral PowerPoint presentation for my mum. I thought I would do this while she is still alive as I am sure I couldn’t be bothered when I am in mourning for her. It features photos from every section of her life, the oldest dated 2nd August 1925 when she would have been seven.
     
    She is still well, not speaking, mostly sleeping sitting up in the “loungeroom” with the other ladies. The aides say that occasionally she participates in an activity, shakes a rattle to the music program they do Tuesdays and Thursdays, plays with items stitched to a felt tablecloth, runs strings of beads through her fingers. It is so minimal her activity now but in the severe stages of dementia that is how it is.
     
    She was “asleep” on Tuesday when I was there but she has a thickened drink and I fed it to her on a spoon and although she appeared almost unconscious when the spoon touched her lips the mouth opened and she swallowed it down. It is the interest in food that keeps you alive towards the end, the good eaters survive longer apparently.
     
    People ask me why I still visit as she doesn’t know me, has not said my name for probably three years or so, sometimes doesn’t even acknowledge that I am there. I go because I love her, want her to have the best life possible and know that by visiting her the aides etc get to see her more as the person I see her as. I know that doesn’t make sense to a lot of people but it does to me.
     
    Ray and I have had a good week. I say now that that just means there has been no major upsets only the kind that I am used to dealing with. Ray has no infections and so his behaviour is in the normal range. I think it helped that our daughter and her family came as the fact that they had not visited us in a while may have worried him as much as it worried me.
     
    We all know families can get beyond being interested in their oldies and decide that “out of sight is out of mind” so it worried me that they stayed away so long. Our daughter was going to ring with some dates we might like to go down there but that didn’t happen so I am wondering if they really want us to visit again. I hope that it just means they have been busy this week and it slipped her mind.
     
    No major events this week, we did go out to lunch on Thursday, which was nice. The last Kids Club this week so I get three weeks off and Ray gets to sleep Wednesday afternoons for three weeks. I love the kids but they are really manipulative and often disruptive, disorganized and down right rebellious to I often come home feeling as if I have wrestled with alligators not just played handball in the yard and organized craft activities for a dozen or so 5-12 year olds.
     
    Lets say winter is still lingering. Last night it was down to almost freezing again. I had to go and find my hot water bottle, which I had packed away. I wish spring would actually get here. I planted out a few herbs today, I have plenty of mint sprung up already, parsley, oregano and still a few chives but they are weedy and need replacing. I’ve just planted out coriander seedlings and some chilies because although I don’t like them the boys do so I can give them away. I planted out some lettuce seedlings too but usually lose them to the snails. I don’t have the heart to kill off the snails with pellets so will have to be vigilant.
     
    I love the birds being so busy this time of the year. They fly through our front verandah narrowly missing us sitting there, it is scary but hilarious to see Ray duck when they are long past him. I am trying to sit out with him a little time each day although I am often busy with chores inside. As a caregiver I can be too busy doing things FOR him that I fail to do things WITH him.
     
    Tomorrow Trev is looking after Ray for a few hours while I have lunch with some of the Stroke support group caregivers. They go out every month but since it has mostly been Sunday lunches and I go to church it has been a while. I was pleased they decided on Saturday lunch for a change. Trev has done a few little things for me this week. He is a good son. Not perfect but pretty good, like the rest of us.
  2. swilkinson

    a family event

    By swilkinson,

    We had a visit from our daughter and her family, they left home at 2pm yesterday for what should have been a three and a half hour trip but with Friday night traffic going into the city and the” weekenders” leaving the city to journey up here to the Central Coast and beyond it was five hours before they actually got here.
     
    Trev and I spent two hours yesterday morning getting what used to be his room tidy enough for Shirley and Craig to sleep in, with me getting bedclothes assembled for the sofa bed for Christopher and tidying up the front room for Naomi as well. It is strange how we leave the big clean-up until a few hours before our visitors arrive so when they come we are almost too tired to appreciate that they are here and we have time to talk, interact and catch up again.
     
    We went out to dinner, an ordinary enough meal but we were eating out together and that counts. And then time flew and it was time to put the littlies to bed and go to bed ourselves. Shirley was tired, she did three funerals last week and Craig also did one. They get called on when the family wants some religious imput but doesn’t really have a religious affiliation. They try to make it a good experience for the families but it is a hard ministry.
     
    This morning seemed to be all about cooking, first I cooked a Saturday morning breakfast, corn fritters, eggs and bacon and lots of hot buttered toast. After breakfast when we had a little chance to talk it was time to assemble the salads and cook the hot vegetables for the BBQ lunch for Ray’s birthday. We’ve had so many BBQs in a row it was hard to make different salads for each one but I managed to do it.
     
    Shirley, Craig and kids plus Lucas did a walk up a nearby hill to see the view, to point out the flora and fauna unique to this area, to enjoy the spring blossoms. Then they walked down to a local park and the kids played ball games and used the park equipments, more bonding time for the kids. Wish I could have been there but someone has to stay with Ray.
     
    We banned the trampoline as Alex is still recovering from last weekend when he caught one of his toes in a spring and then had his sister jump on him and injure his foot. We'll never know how these things happen as the kids reports were garbled and frankly unlikely but it cost Pamela two days off work as Alex could not go to preschool with a swollen foot. It was good of Trev to come back over and work on the swing we had been promising the kids for this visit. He worked on it all morning and finished it just before it was time to BBQ. Must have been built strong as even the adults got to try it out.
     
    Did the kids play well? Yes and no. We had the usual tales…he did this, she did that. The little ones tried to keep up with the bigger kids and tripped over their own feet. They tumbled and fell down the hill, they cried and cried, then picked themselves up and went on with their games. It was the usual kind of day in any family reunion time. It was just so nice to be part of the busy, noisy, family atmosphere. It’s usually much too quiet around here. I’m thrilled they took photos, I might get some nice ones of the little ones together.
     
    There was a coolness between Edie and Trev and I didn’t offer to buy into it. If a relationship is to survive they need to have their battles and get over them on their own without parents butting in on the argument. We will see how it goes. Lukie of course is oblivious to this so went on being his usual irritating, loveable self. Just as well kids don’t realise what is going on most of as the time or we adults would spoil all their fun.
     
    We had a good BBQ, the lamb was superb, the steaks were tasty and the sausages were gone too soon. The salads were mostly eaten and the follow up of cake and coffee seemed to be okay too. Just a little time of talking, washing up etc and then it was time for one family to go back home. As busy Salvation Army officers they cannot at this stage be away from their Corps for too long. As it was they had several phone calls from folk who didn’t realise they were away.
     
    It’s a strange feeling, you are tired and want the peace of having your own home back in your control but miss them almost as soon as the car is out of sight. It was late afternoon so Ray trundled off to bed, Trev and I cleaned up and the visit was all over and everything packed away until the next time. Miss you Shirley, love you little family.
     
    Ray coped okay. I wouldn’t say he did well, as he got irritated with me a few times for “telling him what to do". But with all the changes in walking spaces etc because of the sofa bed being out and the mess in the kitchen from the extra food being prepared and the kids running through the house and under everyone’s feet it was definitely harder for him to plot a course for himself. The event was put on for his benefit, so everyone could be together to celebrate his birthday but I don’t think that registered with him at all. Ray is losing his awareness of what is happening around him and why now.
     
    I know we hold these family events to try and rekindle our relationships and to help the little cousins to relate to each other. I wonder if that is what will happen? It seems we become more and more isolated as the generations change so is this like trying to stop a runaway train? I’m hoping it does make it easier for little cousins to turn into adult cousins who enjoy each others company and endeavour to keep in touch. Being a migrant child I never had the experiences I am hopefully giving to the next generation.
  3. swilkinson

    worth talking to

    By swilkinson,

    On Saturday we went to a 60th birthday party. It is the turn of the season so a heavy sweater didn’t seem appropriate. We had to wear something pink as it was a “pink party” so I bought a pink blouse on Friday and when I got it home and tried it on with the jacket I wanted to wear it with - CLASH - so there I was with no clothes to wear! Tragedy if you are a woman. In the end I found a couple of things that were pink and sort of went together so I was sorted. PHEW!
     
    So why do we worry so much about our appearance? At my age it is probably because I want to look “nice” not sexy or film star glitzy, just nice will have to do. I want my clothes to match, each other and the occasion, and to look as if they belong to me. I know I am not good looking now, though I once was, so I want to look attractive, so people still talk to my face instead of behind my back “oh the poor …whisper…whisper”.
     
    We had a good time at the party. Nothing went wrong and there were people there who wanted to talk to us. A distant cousin of Ray’s was there and came over to exchange news. He stopped me on my way past his table and asked me did Ray have dementia? I said he does. He was polite and said that Ray looks good and I must be taking good care of him. It is the usual reply.
     
    Yesterday was Father’s day so the boys put on a BBQ, well Trev did. Steve was alone again so I guess that is the pattern now, Steve and the kids visiting “his” Mum and Dad. Anyway we had fun. Nice food, the little ones mostly played well together, the older two even went in and talked to Ray for a while. That was yesterdays rule: “it is okay to go into the house as long as it is because you are going in to talk to Pa”.
     
    Ray has suddenly decided he can’t sit outside if it is “cold”. This doesn’t mean of a low temperature, it usually means windy. So yesterday he sat inside as he had done on Friday when the wind was blowing and some of this morning. This is a real departure from him always wanting to be on the verandah doing his word puzzles so I hope it doesn’t last. At least when he is outside he is engaging with the passing traffic, waving to passers-by etc.
     
    There will always be some changes with Ray. The MRI showed massive changes in the brain. He seems to cope very well with life considering, said the neurologist. Yep, most days he copes so most days I cope. Then we go through some more changes and I start to struggle again. I have been looking forward to Spring when I hope the warmer weather will bring some positive changes, longer days, more access to pleasant places to spend our time. Hopefully there will be more BBQs, picnics etc. Unless the wind blows and Ray finds it too cold…
     
    I have just lost my “grandmother” well Mum’s step-mother actually, only five years older than Mum and she died of bronchial pneumonia in England on Thursday night. A distant cousin emailed me and then Mum’s “sister-in-law” phoned me. Although the step-mother never thought of us as part of her family Mum’s stepbrother who lives in Queensland always called Mum his “little sis”. He is in hospital, fairly seriously ill so his wife contacted me on his behalf. It was a nice thing to do and I appreciated that.
     
    Last night I talked to Ray’s older brother’s wife for about 1½ hours. She gets frustrated with her husband as he is slowing down, partly age, partly recovering from lung cancer chemo, partly natural cussedness. She rings and asks me how I am and then tells me how she is for the rest of the call. She is past retirement age but still works, I think to support their lifestyle as much as any other reason and to stay out of the house. Like a lot of people she knows that eventually she will have to sell up and move to suburbia.
     
    This morning for most of the morning I repotted plants and got them back into their positions. We had gale force winds overnight Saturday night and some of the plant pots rolled down the lawn dislodging the plants and scattering dirt, one or two cracked so I just repotted and replaced. I have a heap of bromeliads to split and repot, they just love it here and grow and multiple like rabbits. They are lovely leafy plants but they take up so much room! I’ll have to give some of them away.
     
    So why was I thinking about appearances? Well in 1980 I met the American Ambassador to Australia on a river bank in the outback. We had a conversation about the river flow and water problems and what was grown locally. We had gathered to watch a re-enactment of the landing of Charles Sturt an explorer who was credited with the discovery of the plains around Narrandera, the town we lived in back then. We knew there were to be some dignitaries coming, the mayor, a couple of politicians, those kinds of people. We had come early as we had someplace else to go.
     
    When the official welcome was made by the mayor he welcomed the American Ambassador Philip H. Alston and it was the man in the white shirt and trousers held up with braces who had been strolling among the crowd talking to the farmers, their wives and the local community. No airs and graces just a middle aged man who slipped his jacket back on and came up to the platform to thank the mayor for the welcome. As we say here: “just like ordinary folks.”
     
    So I guess it doesn’t really matter what you look like. It is what you are inside. A nice man with a warm smile and a soft accent, I think from Atlanta, or close by there. A nice man who was interested in the folks around, what they did, how they lived. I have never forgotten him. People in that kind of position are not always as easy to talk to as he was, or as ready to just take an interest in wherever they find themselves to be. I looked him up and he died in 1988. A long time ago but this morning I remembered him.
     
    So when our time on earth is finished who will remember us? And why? Maybe because we stopped for a while and treated them like people who were interesting and worth spending some time talking to?
  4. swilkinson

    turning points

    By swilkinson,

    From time to time we reach some sort of turning point and I realise that something that was once easy for us to do as a couple is no longer possible. I guess with spring now approaching and seeing summer ahead with all it’s enticements I am again listing what Ray and I can do and what we can’t do. And I sit here mourning the losses and sighing with relief that some things are still possible.
     
    The Apex40 Club we belong to is going on it’s three day excursion at the end of this month to an area close to where Ray was brought up on the Hawkesbury River. Prior to his strokes Ray would have been the one insisting on a boat for a river trip, getting the rods ready for the fishing and sorting out the camping gear. Now we are not going at all. Too difficult now for us to go camping, not much better in a cabin without the proper disabled access,definitely not good running the wheelchair over uneven ground, up and down river banks etc. There are so many reasons why we are not going. And it is so sad that this so close-to-home experience is not accessible now.
     
    I am not sure we will be doing much in the way of going to the beach, enjoying evenings out, sitting under the stars at the end of a BBQ with friends etc this summer. Ray is very much like your average 80 year old now, fond of his own home, his own bed, his own routine. At 67 that is not so good for him and for me at 63 even worse. I still want to swim, walk, drive, holiday, explore new things. I still want to be surrounded with laughter and good humor and have some fun! It is too early for me to take out my teeth and put them into a cup at night, I am not ready for that yet.
     
    So do I get morose and full of self-pity or what do I do? Well, eleven years of caring and counting I have done a lot of “giving up” so I should be good at it. I have done a lot of adapting to circumstances, putting Ray’s needs first and finding a “new normal”, but that doesn’t mean I am happy about it. So thinking local and shorter expeditions is probably the way to go. We can still enjoy summer, we just need to put some planning into how much we can do and do it in the mornings when Ray is fresh and more alert.
     
    So our “days out” will mean a trip to one of the beaches or lakes nearby, a walk along the shoreline pushing the wheelchair, a cup of coffee instead of a picnic. Our evening entertainment will be a BBQ with family in the backyard rather than a night out, with Ray having access to his own bed when he wants to go there. And maybe I will catch up on those girlfriends when I can have Ray in care for a few days. Okay, it is not the high life, but it is a life.
     
    Give a thought to the long term caregiver, the marathon runner of the caring business who battles the seasons and the elements to keep themselves and their care recipient sane and in good heart. It is not an easy job and if you can lighten the load in any way please do so. Because we are survivors or caregivers ourselves does not mean we can be oblivious to the needs of those around us.
     
    Here we smile at the other caregiver who pushes a wheelchair past us, acknowledging we are part of the same kinship group. I open doors if I can or offer to take a trolley back to the bay for someone older than me who is struggling. I need to feel as if I am lightening the load for someone else in addition to dealing with my own load as well as I can.
     
    So if you are changing from summer to winter or winter to summer you need to take a while to look at the season ahead and see what you need to do to make the time ahead easier on yourself and better for the person you care for. It is the planning now that will make the time ahead easier to deal with. And although we will never have it easy, easier is better.
     
    We talked about some of this in chat tonight and probably will some more in weeks ahead. A few different opinions, some handy hints and help sorting things out make life much more do-able. Just as many hands make light work so many opinions give you a range of options to work with.
     
    There is a lot of life ahead for Ray and I still and we both need to be able to enjoy it. If I make myself a martyr that will not work out well for Ray either. So hopefully I can gain his co-operation too as I plan for spring and summer. I want summer 2010/2011 to be a good one for us.
     
    We may sit on the beach but putting our heads in the sand is not an option. The caring ostrich needs to keep the head up and the eyes looking ahead.
  5. swilkinson
    We had a lovely sunny weekend, on Friday the temp was warmer than it has been for a while and I got to sit out in the sun in the afternoon and warm my bones. I will be so glad when the cold damp weather goes as today the rain and cloud cover is back and it is markedly chilly. I spent the morning doing housework and then provided a lunch of soup and bread rolls for my sister. She called in on her way to another appointment Yep, the cave bears are out again.
     
    I hadn’t seen my sister for a while as she had had a whooping cough virus and I had the bronchitis for four weeks. I usually see her a few times through winter but not this year. She has four children,all married, has ten grandchildren, is into PalTalk and Facebook and has a wide circle of friends with whom she goes to lunch etc. We are similar in looks but very different in the way we live, and that is okay with both of us I think.
     
    We had three lots of visitors on Friday, my four monthly friend from down the road came up for a visit, an old friend from the other direction and then my son came to drop off my grand daughter and finished up staying for dinner and going home about 9pm. That was the longest visit for a long time so I guess the spat is over, at least as far as he is concerned.
     
    His two little boys ran riot as usual but he and Trev washed up and tidied up some so it was not a lot of extra work for me. Having my granddaughter here was fun. We went to the church fete on Saturday morning. She is so good at spending my money she makes me seem so generous…lol. We enjoyed the lemonade the Kid’s Club made, the scones with jam and cream the Fellowship group made. For lunch we had the sausage sandwiches the Men’s Fellowship (which technically Ray belongs to) cooked out in the sunshine. BBQ …yummy. Mind you I just had egg as usual.
     
    We had Lukie over to play with Tori on and off during the weekend. He is very loud and I think Tori got sick of that. She likes to come to Grandma’s for the peace and quiet and that was in short supply this weekend. She came to Sunday School and we had nine other kids as well so it was a busy hour or so. It is amazing what you can make with colored cardboard and some drawing pencils. The lessons determine the craft but each week is a unique time of creating and “owning” the craft of the day – no two alike!
     
    We did have a lot of fun with the Wii too. I had about five months when I did not use it at all and now I am back to doing sports and fitness programs again. I got a nasty shock getting on the board and getting weighed – where do those extra pounds come from? Best get active again or the spring blouses will not button up...shame on me!
     
    And on Sunday evening back came Tori’s beloved Dad and the little boys and this time we had a makeshift dinner of processed chicken burgers and spaghetti after some homemade pumpkin soup that Edie and Trev had made. It was a good fun time of fellowship and laughter and reminiscing so well worth the effort. We don’t do that often enough now.
     
    So if the bears are out of the caves I had better review the winter wardrobe, throw out some past fashion faux pars, brighten up the lipstick and powder and get my “summer look” going. Well that is a bit of fantasy but you know what I mean. I need to cast out the winter woollies and winter blues and get ready for spring.
  6. swilkinson
    My health has settled down a bit here and I am coping okay. Not much help when I was sick but as the “strong woman” I am not considered in need of help. As the helper to all and sundry I am always the giver, not the taker. In our friendship group everyone is a well-wisher but no-one actually wants to do anything hands-on. The ladies with a casserole that once came to a household where there was sickness are a thing of the past. Life moves on and progress does not necessarily build community.
     
    I have found my energy again so I am back in to working in the house and the garden and willing to jump in the car and drive somewhere if I need to. With winter still here I am not sure I actually want to go out at night as yet but last night at the Lions dinner I noticed I was happier to be in a social setting again.
     
    The family is unaware of how much effort it takes to look after Ray with the exception of Trevor. I am trying not to put any extra on him now that he has a partner and a step-son to look after, I appreciated his years of being our back-up person but now he needs to re-structure his own life. We all need to have those good middle years before taking on the care of ancient or decrepit relatives.
     
    Because we had some survivors “visit” in chat today we were talking about going back to work. When Ray had the 1999 strokes we gave up three jobs, he worked as a carpenter and I worked as a government worker three days a week in Pensions and two days a week in a parish as a kind of welfare officer. So the strokes took us both out of the workforce. It is over eleven years now since my official resignation, a lot of lost years and lost income.
     
    I have had the painters here on and off for five weeks, an unusually wet winter meant that the five days or so they had planned to be here turned into five weeks. They are gone for four weeks and then we will have the rest of the interior painted. That is a huge job and requires me to do a lot of sorting and packing as a lot of our storage units need to be moved. Another mammoth task for a caregiver to tackle, so will break it up into manageable segments and ask for help if I need to.
     
    I know when the painters were doing small repair jobs Ray must have cringed at the workmanship. Ray was always very precise and as a trained carpenter and cabinetmaker his joints were always perfect. The painters sort of did the job, not dainty work by any means but at least the repairs were done. I could never have afforded someone of Ray’s skills to do the work. I still hanker after having him back to being my handyman again. Oh for a time machine or a magic wand!
     
    I do appreciate we are in a better spot than most. We had savings designated for our retirement and a small pension payable after invalidity and with a top up from Ray’s government pension we have managed very well. I am not mourning the money lost, what is the point of that? I am mourning the passing of an era – our working life.
     
    So I need to get on with living now. I am a great admirer of Sarah (spacie1) and her ability to get Gary out and about and make their summers memorable. I am held back I think by the way I see things as obstacles rather than challenges. In the early days (2002 – 2005) Ray and I used to do holidays by coach but then he slowed right down the result of the 2005 stroke, or maybe the cumulative effect of all five. For three winters we were able to go to our daughter in Northern Queensland for holidays but now she is down south of us so winter holidays there would be even colder than if we stayed home. And she lives in a two storey house with guest accommodation downstairs and it is not as convenient as when we were all on the same floor. And Ray has to be dragged up the stairs so all round not as good.
     
    When my parents were older we used to take them on holidays with us. There would be seven of us, Ray and I and three kids and two older folk. It was always Dad’s idea and he and I would work on the itinerary. Mum never wanted to leave home but we would convince her it was only for a few days. The holidays varied in length but Mum cheered up after few days and things got better. Dad just loved the holidays and Mum was happy with the family around so he got to enjoy the time too.
     
    The next few weeks are a pivotal time as we change seasons, spring runs into summer then autumn and back to the cold weather. I hate the really humid days of summer but prefer the heat to the cold. I just need to look at life realistically and work out what is possible with Ray this coming summer. I want a holiday but don’t know that that is feasible for the both of us. I am reluctant to start taking a holiday by myself but I know a lot of caregivers do when the person they care for is easier to care for at home than away from home, which is the stage we are coming to now.
     
    All decisions we make as caregivers are hard ones to make. Early in the timeframe it is about the recovery of our care recipient, then it becomes about maintaining what they have gained and now in my case planning for care in the future. I say the future as I am hoping we can plateau here for a while. At this stage I can almost maintain Ray with the help I am getting – a little more help would be nice though, taking some of the strain off me.
     
    My crystal ball is broken, my teabag doesn’t leave tea leaves to be read – guess I just have to take it a day at a time and see what the future brings as usual.
  7. swilkinson

    coping better

    By swilkinson,

    I am feeling a bit better. My nose is bothering me less and the cough is not getting any worse. Thank goodness I am also finally getting some energy back and feeling better about life. I have been a sad sack for the past week or so,now it is time for me to pull up my socks, get myself together and start planning things like spring cleaning.
     
    I sometimes feel as if I am half-awake, as if I am not able to give life my full attention. I know that is common in survivors but I think it is common in caregivers too. It might be because thinking for two people gives you almost a split personality, it keeps your mind very busy, far busier than when you worked or raised kids or thought you lived a busy life.
     
    Today I was doing what I often do, looking for my keys and I came across a pile of unopened mail. I know Trev often brings our mail in and it sits on the table and I clear it off and put it in a heap. This pile contained the usual information letters from insurance companies, banks etc and two unpaid and almost overdue accounts and a 60th birthday invitation from an old friend. I knew it was coming as she rang me to tell me she was inviting Ray and I to her birthday party, the venue is disabled friendly and she hoped we would be able to come. So I will make the effort and we will go.
     
    Tonight I received a phone call from another long term friend. As she talked I realised she didn’t know much about our last year or so, so it must have been a while since we last spoke. She is in a good place in her life as her children and grandchildren are all doing well. As I talked to her I realised how wide the gap was between us now.
     
    My friend is a person of goodwill and was once a very good friend, we had children the same age, came from the same kind of background. Our husbands were once really good mates. But somehow our lives are now so different that we have very little in common. I think in the end she made an excuse to ring off. I didn’t really get a chance to say good-bye but that was what it felt like, as if I was saying goodbye.
     
    Mum was good when I saw her yesterday, she is not as alert now as a few months ago, sleeps more, seems a little frailer. It is hard to chart the development of her Alzheimers as she seems to change very little. But I realise that changes have taken place, like she is now having energy foods instead of cake for morning tea, to “build her up”. I can see she has lost a little more weight.
     
    She was making a little whimpering noise as if she was unhappy. I asked the staff if she was okay and they said yes, no infections, not in pain as far as they know. As soon as the warmer weather comes I will take her outside in the wheelchair, maybe sunshine on her skin will make her feel better. I feel like a mother with a small child, worried about her well being and wishing I could understand her in her strange wordless world.
     
    Caregiver chat this morning was good. It had some sad elements in it as chat sometimes does but it was still the usual supportive framework for discussion. I enjoy the chat as I think the other participants do. I have been doing chat for close on four years now and never tire of it. I do miss people when they no longer join us but also enjoy meeting newbies and making them into friends.
     
    This afternoon Ray and I went to Kid’s Club. It was cold and blustery so I was out in the yard with the five boys who always love to play outside. They come straight from school so enjoy the 30 minutes of wild play. I let them go without comment unless I think what they are doing will result in injury or death. They build the cubby house out of sheets, play ball games, generally play very noisily, then it is in for afternoon tea and the rest of the program. Twelve kids today and a good but robust time had by all.
     
    The tiles are finally set, a bit more painting, doors and window frames and the toilet is done. We still need the rest of the interior painted but there is a lot to sort and pack up for that to be done so we will have a break for a while so I can clean up present mess and attempt a spring clean. It will all be done eventually.
  8. swilkinson

    scary thoughts

    By swilkinson,

    The painters are still here, it is still raining every second day and our life has sped up again. That might have been the reason for an incident last night. It was well after midnight when someone shouting woke me up. It was Ray. He was shouting: “ Are you there Les?” when I answered “I’m here.” He said: “I don’t know where the toilet is in this place.”
     
    For a carer this is really scary. Les, his older brother and Ray shared a room in their mid-teens. It was a back verandah and their younger brother was up the other end. So I guess shouting to each other was the normal method of communication. Using someone else’s name can mean all kinds of things, like he has had another stroke, he has had a memory lapse, he is confused etc. The thought that he might have had a stroke which had robbed him of current memories was my first thought. That would have been really scary.
     
    Can you imagine living with someone who no longer remembers the period of time you have been in their lives, who thinks you are his sister or his mother or his aunt? One of my acquaintances had that happen to her. One day her husband woke up and had no memory of her at all. He wanted to know what right she had to be in his house etc. She.thought really quickly and said: “I’m your housekeeper.” She moved her possessions to the spare room and lived there quite happily. He accepted that she showered him, cooked his meals etc. The doctors thought he had had some kind of seizure and that had speeded up the dementia. All you can do under those circumstances is accommodate the delusion and go on with life.
     
    Happily once the lights were on and Ray could see the familiar surroundings and the same old wife as usual in her night attire he calmly accepted the urinal which was in it’s usual place. He didn’t say anything further and went straight back to sleep. I mentioned it this morning and he said he thought he was having a dream. I think so too but worry lest this is a sign of things to come. I might add I did not go back to sleep but came out onto the computer for a while until my mind stopped worrying about what had happened.
     
    It is so hard sometimes to contemplate what may or may not be in our future. I belong to a couple of dementia sites and some of the posts talk about the loss of recognition as it is so painful for the caregiver to no longer be know for who he or she is. Not something I want in my future with Ray at all.
     
    I didn’t do anything much today; I left Ray on the front verandah with his word puzzles and worked on repotting my pot plants. By the time the painters got here just after lunch he was heading for bed. They have promised me that tomorrow they will start packing up and returning the verandahs, front and back, back to the way they were – weather permitting of course.
     
    The rest of the house will be painted in late September, one room at a time. That way hopefully we can accommodate Ray and let him have some of his normal routine. And hopefully by then the weather will be warmer and paint will dry faster.
  9. swilkinson
    Ray and I have been away the past four days and it rained and it rained and it rained some more. Cold, wet, windy and gloomy pretty well describes the weather we have been having and I was so grateful not to be home and having to go out in it.
     
    I have been feeling guilty as after going to Camp Breakaway twice last year we have been four times and it is only the end of July. It seems they had a quite a large grant of money earmarked for disabled children and people with dementia and their carers so they put on extra camps. As it is winter people have been turning down the invitation, most preferring to stay in their own homes.
     
    Some of their regulars are in respite or unhappily now in full time care which is inevitable as their disease progresses so we got an extra invitation. I must say I am more than happy to go any time we are invited. It is such a good break away. For me it means social and physical support for Ray and for me three days when I don’t have to shower Ray, cook meals or clean up after him. It is a real bonus and does make a difference to our lives. I wouldn’t say I come home revitalized as I still have a to do a lot of hands-on care but I am refreshed by the kindness shown to us.
     
    I am suddenly aware again of the healing power of kindness. I saw it in the melting of the two new couples who came full of suspicion and a kind of hopelessness and went off today faces wreathed in smiles and with a new spring in their step. As we know coming on here there is some comfort and strength in knowing you are not alone and that others share in your struggle with a debilitating disease. And the older you get the less energy you have to fight with. And love their partner as they might the caregivers know they will not be able to cope forever and a parting of the ways is close in some cases.
     
    So if you missed me in chat on Tuesday or posting on the boards that was where I was, enjoying the entertainment like watching the marching band and listening to the skirl of bagpipes on Wednesday. Maybe you can picture me walking up and down to our cabin jumping puddles as I went, or walking in the rain and watching the mama plover defend her two little ones from the ducks and galahs who were enjoying the worms driven to the surface of the large expanse of lawn by the steady soak of rain. Just finding peaceful occupations to fill in four rainy days.
     
    And on Tuesday we shared a special celebration with an older couple as we celebrated our 42nd wedding anniversary and they celebrated their 53rd wedding anniversary. We had a grand afternoon tea party with a caterer’s sized caramel cheesecake and a black forest cake to be cut up among the 21 campers and staff. It is another special feature of the camp that we can celebrate the good times of life together. Some people we have encountered at camps we have known for three years now, for others it may be their first but we are all “kin”.
     
    I had a look at the History Books and saw the newspaper clippings they have accumulated since the opening in 1987, so many people helped, some pictures of disabled kids reoccurring year by year as they enjoyed camps and the fellowship of staff and patrons. How many wonderful people have given their time as volunteers to make all this possible? Craft ladies who make and sell their goods from the Craft Cottage, the auxiliary members, the Rotarians who are the main fund-raisers and form parties of handymen to do improvement to the grounds. Then there are voluntary carers and paid staff who train them and extend their hours way past their “knock off” time. So many wonderful, wonderful people who give of their time and effort make it all possible.
     
    I still have my cold, Ray still has the leg pains and the shakiness, but somehow we are “better”, renewed and strengthened by our sojourn in one of life’s most pleasant places.
  10. swilkinson
    This morning when I left to spend three hours away from Ray who is really my job now, I wanted to find somewhere to sit and think. I finished up opposite the beach at the Surf Club where we have our Lions Club meetings, having coffee on their terrace in the sun overlooking the ocean. It was a nice view with the dark sea reflecting the rain clouds that are still a feature of our winter. There were couples with dogs that looked like stick figures in the distance walking along the beach and down to the rocky outcrop.
     
    A funny thing happened while I was there. I had an egg sandwich with my coffee and was sitting at an outside table holding a quarter between my fingers when a magpie (about the size of a seagull) flew down and snatched it out of my hand. I nearly screamed with fright, then took a minute to realise I was not hurt, just very surprised. What a cheeky bird! I guess he is finding food hard to find and there it was in my hand…lol.
     
    We have a couple of handymen doing some painting on our front verandah and now the shower room and bathroom ceilings which have both needed painting for a while now. It is strange to have people talking around the house, overhead on the roof etc. I know it will all look much brighter and better when it is finished but at the moment everything is in piles around the place and chaos reigns and things are all so messy with all the toys and furniture piled up out of the rain. It looks such a mess and I am impatient for it to be done and the whole area cleaned up.
     
    While I was at the surf club I noticed they have some wise sayings that apply to what they train people to do there. One that struck me as very true read: “It takes one person to make a decision but a whole team to carry it out.” I thought how true that was of this moment in my life. Here today there was me, the two handymen and the carer to make life happen this morning. Nothing we do is ever achieved alone. Everything we have in our possession was made with the help of teams of other people, our food, our furniture, the computer we are sitting in front of, all were the result of a team of people operating together. “No man is an island unto himself” Shakespeare said and it is so true.
     
    I’m still coughing and using over-the-counter preparations in the hope that my body will strengthen and throw off this virus as nothing seems to work against it. The pharmacist made some recommendations this morning so I am taking a couple of more modern versions of the cold and flu fighters to see if that will help. I hope so as I am still pretty miserable after it gets colder of an evening and coughing away all night.
     
    Ray seems to have had a few odd days when he has had falls etc, followed by a good day here and there. I don’t know what makes the difference. Our mentor at Dementia support says that dementia is cyclic and has good and bad periods. I’d like to know how you figure out what is going on and could make some appropriate changes. I will have to do Asha’s trick and “go with the flow”.
     
    This week has been a good week in a way as Trev cooked us two evening meals so I was free of cooking for a couple of days and we have had a couple of phone calls from people we have not heard from for a while. It is heartening when old friends reach out to us across the miles. I sometimes think everyone has forgotten about us but of course they are just busy with their own lives, as we are with ours.
     
    We had Lukie after school yesterday as Edie’s car broke down and Trev galloped off on his white charger (well white car) to save her and bring her safely home. Lukie beat me at a series of Carnival Games on the Wii so was very happy to be here. Tori is coming on Sunday to stay overnight as she has a pupil free day so is off school on Monday and her Mum is working so the little boys will go off to Daycare and Tori will be with Granma and Pa for the day. She will light up our lives for a while.
     
    So there has not been much housework done this week, and very little to show for what we have all done. Of course we have been working toward improvement but we are at that difficult half-way stage. Next week should resolve that and we will at last see the benefit of all the hard work.
  11. swilkinson

    bronchitis blues

    By swilkinson,

    “Nothing can be done”…. not the words a caregiver wants to hear but that is what the neurologist said as he looked at Ray's MRI and the bone scan results yesterday. He also said that although Ray has not had more strokes the area of damage is enlarging so he has more deficits. I asked why and he said: “We don’t know.” I asked why he has had a bleed as well as the blockages; again he admitted he didn’t know.
     
    He doesn't seem to think it is the falls causing the pains so much as changes to his posture, movement etc. He is passing on a list of possible painkillers to the GP so that he can try them one at a time on Ray. The neurologist doesn’t say much in front of Ray, he doesn’t want to discourage him. I will get a lot more from having our doctor read the neurologist’s letter out loud which he usually does. Ray usually stares around the room at the posters on the wall of the doctor’s rooms so I don’t know whether he takes it all in or not.
     
    Ray was walking so badly yesterday I wheelchaired him into the neurologist’s office, usually he is able to walk in. But just sitting in the car was painful for him yesterday. I would be more successful at finding a solution for the pain if it was with him all the time but like so many things the pain seems to come and go which makes me think it may be linked to the dementia…but no-one sees to have an answer to that either.
     
    I went to the doctor myself yesterday morning as I have bronchitis again and am in some pain. I had viral pneumonia in 1991 and get a bad case of bronchitis every couple of years. I am run-down due to lack of sleep. The doctor had a bit of a joke. He said: "Sit there while I read your file." He then turned over a piece of blank paper and said: "Ah yes." I was last there as a patient in July 2008, same reason. Of course I also see the doctor with Ray about once a fortnight so he knows what is happening to us both.
     
    When the three hour respite carer came this morning I didn't go out, I sat in the sun with a blanket over my knees and napped. This afternoon I feel a bit better, probably the antibiotics kicking in so have done some small jobs around the house. I will take it easy tomorrow and hope that the bronchitis gradually goes. As usual as a caregiver when something goes wrong I just have to carry on as best I can. No one is here to look after me so I best get on with it.
     
    I think I am mourning the past again as last night I had a nightmare where someone was holding me down and I was trying to get away saying: “I have to go, my daughter is waiting for me at Cairns Airport.” I know my daughter now lives in Shell Harbour and there are no more lovely winter holidays at Cairns – I just have to tell my subconscious! I love my family and I wish we saw more of them. It would be nice to sit down with for a meal and have a chat over coffee. Why are all our families too busy to visit? Maybe it is “out of sight, out of mind”.
     
    Our two man handyman team came by yesterday to look at the small job of replacing some boards around the side of the house. It is time consuming and we don’t yet know what the cost will be but I’m trusting that it will not be more than we can afford. I have a list of little jobs that need doing to keep the place in a saleable condition so these will be two off my list. They came back today and started the job so maybe by Wednesday next week we will have the boards replaced on the end of the house and the verandah ceiling and railing repainted.
     
    I am hoping to start putting up the surrounds for the vegetable garden soon. I have the materials, all but the posts so have to find somewhere that stocks small posts. I don’t get around to hardware stores much, I guess it is more of a man thing so I will force myself to get the measurements and go out and find what I need. It would be nice to have a veggie patch again. I used to grow vegetables when I was a young woman so do know the basics. And we all know how good something that goes from the garden to the plate is. I will still have the herbs and all my flowering pots to look after of course.
     
    Only about six more weeks of cold weather to go, we are promised another fine day tomorrow so will spend some more time out in the sun and hope that drives the bronchitis germs out of my system. It seems so hard to keep alert when I am on antibiotics; I have a really foggy feeling. Luckily I am only on them for five days so hopefully that is enough to chase the bronchitis away and for me to be healthy again.
  12. swilkinson
    Just had a couple of nights with our grand daughter here, it is the winter break and she had two weeks off school. All three of us went to the shopping centre yesterday and spent some time (and some money) and today while Ray was at Daycare she and I went down to The Entrance to the movies and saw the latest Shrek movie. I love her company, she is bright and fresh and really easy to please. A very satisfactory two days.
     
    I am still coming to terms too with the death of my old friend Claude. It is hard to contemplate that people who have been a fixture in your life for many years will suddenly not be there. I know he was 92 and sick most of this year but it is still a hole in my life. On Friday I felt as if I was wandering in circles. I did see Mum and then went to visit another old friend in hospital. I know - my life is so fun!
     
    Mum has been well the past couple of weeks, not as sleepy as she was a while back and so I have no immediate worries about her health. I know she is not here for much longer but her demise does not seem imminent if you know what I mean. She is still in the centre of my life, I visit her Tuesdays and Thursdays and last week I actually visited her on Friday as well as the little bus that takes them out for the morning had broken down. Looking after her and visiting her has been so much a part of my life in Ray’s post-stroke years, hard to imagine life without her in it.
     
    Monday is usually our quietest day of the week, I do housework and Ray reads through the morning and sleeps all afternoon. But yesterday we went to the shopping centre in the morning and then Tori and I played on the Wii doing various forms of Wii Sports most of the afternoon. She challenged me to the 10 minute Jog and I must say that I did beat her by a few yards but it took me every ounce of breath to do it. I used to do a lot of walking and as it is hilly here I was pretty fit but the last two years I have stayed closer to home and lost a lot of my fitness so I will have to concentrate on getting it back now.
     
    This morning while the shower nurse was here Tori and I went to a local beach and did some walking, something else I have not done for a while. I found that exhilarating, I love to be on the beach and although the steps (lots of them and fairly steep) were a bit of a challenge it was a great idea. She always has loved to pick up shells so took another couple of handfuls of those home with her. There were a lot of different birds flying around the escarpment as we mounted the steps too so that was good to watch.
     
    We do live in a lovely part of the world here and although I complain about our winter being long and dreary it is not really cold, the lowest it gets is just above frost point so it is nothing compared with what a lot of people go through. I think it is those spells of grey sky days with no sunshine that make it seems so miserable. That is when I get those mid-winter blues. At least the past couple of days the sun poked through the clouds a few times, sunny periods, just as the forecasters said.
     
    Tonight I spent nearly two hours talking to Ray’s older brother’s wife, they live in Queensland about 50 miles north of Brisbane. She works, her husband had an accident that left him a semi-invalid in the late 80’s so he hasn’t worked since then. She has some of the frustrations of a caregiver who sees a “normal” husband sitting around doing nothing while she works. We both agree that he isn’t normal, lots of defects from that major accident probably including brain damage, but he “appears normal” so is expected to act it etc. No answers to that problem as we all know. She says I am one of the few people who at least try to understand. Now where have I heard that before…lol.
     
    And so days go by, some good, some bad. As the song says: “tra la la la life goes on”. I am still trying to solve the reason for Ray’s pain that is so strong some days and yet not around at all others. Maybe we will get some more answers when we see the neurologist on Thursday? In the meantime I just have to be patient…I’ve heard that somewhere too.
  13. swilkinson
    I want a new day in the week. It will be called Unday and I’m putting it between Sunday and Monday. Unday will be a Caregivers Breakaway Day. When the Caregiver wakes up in the morning there will be no one else there. They will not have work to do or any commitments. It will be a people free day. It will always have the sun shining all year round, be a pleasant temperature and just the ideal day to stretch out and relax.
     
    Okay, yesterday I had just woken up and Ray had had a fall, so called Trev to pick him up, sat him down for a while and then showered him and went on with the day. This morning he had turned the alarm off and it was 20 past seven when I woke up and he had spilt the urinal in his bed. Yep, clean up, change the bed, put some laundry on, shower Ray and go on with the day. Tomorrow? Who knows? No two days the same.
     
    I am over looking after someone every hour of every day. I know I get some breaks but it is not enough. This is years and years and years of looking after someone else, not having a life of my own! Under the British system a caregiver can get a break of a week every two months. At least that is regular and booking ahead you know how many weeks it is before you can sleep in, get a haircut, go out for coffee etc.
     
    Here we can get up to 60 days a year at a subsidized price in respite rooms in designated nursing homes or respite hostels with nursing care. So far I have taken two or three two week breaks a year and that has been enough. I am not sure now whether a break once a month would be enough. But maybe a weekend off from time to time in between breaks would help.
     
    I have just sent out an email saying we had a good day yesterday and to a certain extent that is true, we did have a pleasant BBQ lunch with our son Trev, Edie and Lukie and then Trev got out the Wii and after Edie and Lukie had played Carnival Games Trev Lukie and Ray had a couple of games of bowling and Ray won the second game. Good for him to occasionally have a win, do something well, have some praise, we all need that to happen.
     
    So this week we have our old friend Claude’s funeral Wednesday morning, which means I will not be at chat again as I will be on the way to the funeral. I can’t miss this one as we have been friends with this family for over 20 years and for the last four years since he went into the hostel and then the nursing home I have been his main visitor.
     
    The family will gather and cry and say how much they’ll miss him and they will but they have not had the week by week contact like I have. They are nice people but prone to “living their own lives” as so many of our friends do. I wonder who they think calls in to say hello and do small errands, and if they think kind neighbours should do the things families are meant to do or if indeed they think about it at all? I will miss him anyway.
     
    I know it sounds as if I am always whining about my life, sometimes that is the case. I get unhappy about the unfairness of life, the unequal burdens some of us carry, the lack of appreciation and thanks, the way it is just assumed that we will do it, we will go on doing it, we are happy to do it etc.
     
    Work is work, and looking after a person with multiple disabilities is hard work. And sometimes too much work for one person. But the alternative, putting the person you have loved for 42 years into full-time care is not the answer I want. No, not at all, I just want a little more time to myself, some worry-free time off, a weekend away, or a day of pampering.
     
    Having said all that – give me an Unday once a week and I will be fine.
  14. swilkinson
    I have too much time on my hands in winter. So I get too much time to think. That is bad when it is obsessive and introverted, which it can sometimes be but not bad if it allows me time to trim my sails and make some adjustments to my future path in the journey of life.
     
    I drove past the beach yesterday and despite the cold dark look of the ocean there were a few hardened board riders out. That is how it should be. We need those people who know the ocean well. We belong to Lions and our Club dinners are held at the Surf Club Clubhouse so we have a lot to do with the Lifesaving Movement and regularly donate money to help supply equipment etc. I love the beach but I am not a strong swimmer so admire those who can read the ocean as they do and look to them to keep me safe.
     
    In the journey through life we come across a lot of dangerous shoals. It is good if there is someone close by who can say: “No, not that way, come this way, it is safer.” Of course we can choose not to listen, go on blindly doing what we want and make the journey much harder for ourselves and the people that ultimately have to rescue us and set us up again. But we are wiser if we at least listen and make some adjustments governed by what others observe in our situation.
     
    I fear that on the stroke journey many are doing just that, denying the reality of what is happening and doing things the hard way, shutting out the advice of those who would help and trying to do it all by themselves. If you are reading this of course you are not in that situation, you have come looking for help and are heeding the lifeguards shout.
     
    So what do we do with advice? I’ve said in a previous blog that an old friend of Mum’s used to say it is like eating a chicken, you eat the flesh and spit out the bones. In other words you take the advice that seems appropriate for your situation and use what is good in it to make some changes.
     
    I have been very lucky in my life that at critical turning points someone has been there to shout: “Not that way…” and so I have avoided making some big mistakes that would have changed my life radically, and not for the better. Though in a few cases I have ignored advice or wise words and gone my own way and had to suffer the consequences.
     
    So you come on here and read and see the examples of others and what they are doing to get well if you are a survivor or learn from others how to care if you are a caregiver. Good first step. Then you look at your own life situation and with those glasses that allow you so see the truth and know the truth say: “What can I do to adjust this situation. Is there a better way of operating here?”
     
    I think that is one of the benefits of chat. On good days we have time to put a question out there and get some answers. It may not be the answer you were expecting or looking for but it is like suddenly seeing life from someone else’s perspective. And as we are all in the same situation or roughly so you can rely on the person answering to use his or her learned wisdom to focus on a problem.
     
    It is the same with posting a new topic. You ask the questions, a lot of other people type in an answer or a response or offer support in some form or other. Again because they don’t know our circumstances the answer might not fit the problem but at least it gives us more to think about, stretches our horizons a bit and gives us at best a new insight. It is like the lifeguard in the tower who sees so much further than we can standing on the sand.
     
    In viewing the blogs we are very lucky to have that precious privilege of seeing life through another person’s eyes.
     
    I have read answers sometimes and wonder how the person got there from the question I asked. It sound so easy when your mind is not clouded by denial, high expectations, trying to do what is best for all etc. For all of us struggling with a new situation reality bites. And recovering from reality bite is like recovering from shark bite. You have to go get some first aid, look after yourself and make sure the situation is monitored. So we do seek advice and see what the treatment is and follow the instructions.
     
    How do I apply this to my own life? I read here and on a couple of dementia boards as Ray’s dementia again alters our reality. I seek some personal help from a counselor, well at the moment that is not happening as the worker can’t really help me as she is trained in another field, but I will eventually find someone. In the meantime I can ask my questions of appropriate people. How do I do this? How do I cope with that? If I wanted to do… how would I go about that?
     
    I am often so bogged down in caring for Ray that I do not see my own life at all. It is like having your face in the water looking down, it is okay for a while but if you keep it in there too long you drown. So I need those lifeguards to look out for me. Friends or workers or others who can help me direct my path so I eventually complete my journey.
  15. swilkinson

    talking for two

    By swilkinson,

    The carer who comes on Friday to look after Ray for my three hours respite had a long talk to me this morning. She had been worried that she has been minding Ray and has not had any training on looking after people with dementia and took advantage of an offer to go to a seminar and said she learned a lot that will help in her work. The mentor who runs the support group I go to ran the seminar. He is excellent. I have learned so much by going to that group.
     
    She had not been able to stay for question time so decided she would ask me her questions. I could answer some of them out of my experience with Mum and Ray so she was happy with the answers. There is a saying though: “If you have met one person with dementia, you have met one person with dementia” which means all dementia sufferers are different with different cognitive levels, different behaviours and different problems. I guess there are some commonalities and if you work with dementia clients on a regular basis you get to recognise some of them and work out how to deal with them. She gets on just fine with Ray.
     
    She asked me if I ever felt tired as the mentor had stressed to the care professionals that the caregiver was acting and thinking for two. That is certainly how I feel at the moment as if I am walking and talking for two, escorting Ray for all his medical appointments, filling in the forms, answering the questions on his behalf etc. I am glad she went to the seminar, at least that is one more person who knows what it is like to be part of a household dealing with dementia.
     
    I took Ray for the cortisone needles today and although for some reason I thought they were looking at his ankle the needles were actually into the bottom of his spine. If he is still in pain by next Wednesday he needs to go again next Friday for another one as it means they have given him too low a dose. I hope something works soon as both he and I are having broken nights sleep and that never sweetens my temper!
     
    We did go out last night with the friendship group and I was glad in some ways we did but listening to everyone’s plans for a trip overseas, a long stay in a warmer climate at an expensive Resort, a caravan expedition up the coast to northern Queensland etc it is very hard for me not to feel envious. In some ways they all come from the Planet Normal and I don’t. They all enquire solicitously how we are going and give Ray a kiss and me a hug but I know they will never know the feeling of isolation all of this sometimes brings on.
     
    Just talking to my older son who was complaining how tired he is, how busy his job is etc. As he works for a firm of funeral directors and this is winter I guess this is peak season for them and a very busy time indeed. I am glad he has a good job and earns a good wage to keep his little family going. Like we did he will find having three children is expensive and it never was easy to make ends meet so a good wage coming in helps it all happen. Funny how this generation acts as if no-one else has ever been through this though.
     
    So…what does the future look like? Hope it is soon pain free for Ray and I have the strength to keep going looking after Ray. It is winter so I can make that the excuse to take some time at home, to maybe clean out some cupboards and finish off some of my craftwork.
  16. swilkinson
    Ray and I went and picked up the bone scan today and naughty me took out the report and read it. I did medical terminology so had a fair idea of what it said. Sadly Ray has had many many fractures and bone bruises from falls and signs of arthritic joints on his left (affected) side, nerve damage caused by stenosis (narrowing) of the spinal canal etc. It is so sad he has prematurely aged so much. I could also see why he has so much pain with the equivalent of a pinched nerve and the heel and ankle problems.
     
    The way forward at this stage is cortisone needles into his left heel, and I am hoping the doctor recommends some physiotherapy to help improve his walking. He is so hesitant now with his walking that to take him out to the car can take ten minutes. I am still reluctant to take him in and out of the house in the wheelchair but that will be what happens in the end I guess. Or worse he will be in a wheelchair permanently.
     
    I’ve had three interrupted nights sleep in a row so I am tired through the day and unable to sleep at night. I have cancelled all our activities for this week to give Ray an easier week but that means missing a dinner with some nice friends on Thursday night at a restaurant I wanted to go to. It is something we only do every three months or so. I hate canceling out as I really look forward to these get-togethers. I have enough of meetings, church, serious stuff etc, a night out with friends is simply light relief.
     
    Winter, wind and rain and cold nights, all add up to muscle stiffness and discomfort for Ray and several colds and chesty coughs for me. When Ray is sick I hasten out of bed in the middle of a cold night, race around without socks and shoes on, in and out of the house if I have to get the wheelchair, no wonder I am getting cold after cold. I just pray all of this settles down soon.
     
    So no craft today (too windy and cold) no Kids Club tomorrow afternoon (too late coming home, too cold etc) and by Friday I should be stir crazy! I like a busy life but fear that with Ray’s worsening conditions this will soon be a thing of the past unless I can get a good deal more help
     
    I did drop some things in to Mum today as I had been cleaning out and found some more of her nicer sweaters and thought she could use a change. She was asleep so I didn’t wake her up. She looks so little now. Most of the ladies were asleep. As it was nearly lunchtime the aides were waking them to go to the bathrooms and getting them ready to sit down in the dining room. It is strange that life is so routine for them, these once so active ladies.
     
    Please pray for us, for healing for Ray and for strength for me to carry on and do whatever needs to be done.
  17. swilkinson

    ups and downs

    By swilkinson,

    Sometimes we’re up sometimes we’re down. Oh yes, oh yes. It is getting that way, back on the roller coaster again. Not that we are always in pain, sad, exhausted, worried sick etc but that some part of the day it is so.
     
    It is Ray who is in pain, bad pain, almost crying pain. He moves slowly, like a very old man, he needs help to get out of bed and he needs me to push him in the wheelchair as he can’t walk. He sits in the car and sighs and groans and clutches his left leg. And I do not know what to do.
     
    Today he had another kind of scan. The radiographer kept coming back with questions: “When did Ray damage his back, when did he break his ribs, when did he break his hip, when did he break his pelvis, did he break it in two places or one?” I felt as if I had brought in an accident victim or a broken old man. It made me feel guilty, as if there was something I could have done about it all, like taking better care of him or something.
     
    Maybe I should call an ambulance every time he falls but how can I tell when he needs an ambulance and when it is okay for us to assist him up if he can’t tell me if he is in pain or not? I don’t want to keep sending him off to hospital because I know it would not be long before a gerontologist or a specialist of some sort told me I couldn’t take him home because he is beyond living at home now.
     
    I am not a burnt-out carer I am a worried wife. I have a husband who has so many things wrong with him now that it is difficult to sort out what is the dementia, what is the diabetes, what is the fall damage etc. Ray says his little toe is on fire, that it makes his leg shake, that his backache is so bad it is worse than what anybody else has experienced. BUT when he sees the doctor it is all fine and okay, yes, he has had pain but it is not that bad.
     
    I don’t care if we never go to another specialist, or have another x-ray, or see inside another pharmacy. I want a fairy godmother with a nice 2010 version of the magic wand to flick that down, say the magic words and MAKE IT ALL GO AWAY!
     
    And then Mum has had maybe a couple more TIAs in the past month and so is sleepy again and not responding to my visits and I feel down about that too as I love her and want her to have a peaceful decline and death rather than so many little strokes. She is a survivor though, in so many ways, a really tough little person.
     
    But there are also ups, for me at least. On Tuesday night my Lions Club honored me by making me “Lion of the Year”. I say it is because of me looking after one (sick) Lion all these years, they said it is because I fulfill the Lions Club ethics and ideals. Either way it was so wonderful to get the award. I was puzzling out who this nice person the President was speaking about was and then he said “awarded to Lion Sue Wilkinson” and I was so amazed I was speechless and my dinner neighbour had to prod me and say: “Up you go then” to get me to walk up and receive the plaque.
     
    I sent out some very excited emails as soon as I got home from the dinner and I am still getting congratulatory messages about that and the Bishop’s Certificate and it is really good to have some positive news to tell instead of all the negative new that is part of our present journey.
     
    Sometimes it feels as if the good times come at a price. And I can understand why people cherish those quiet, dull, ordinary days when nothing much happens either good or bad and life just goes on. Because I value them to and hope we come to another pleasant plateau like that soon.
     
    I have just spoken to John, the stroke survivor who runs Ray's Scallywags group to tell him of Ray's condition. He said he will be sad if Ray can't come for a while as he knows how much Ray enjoys this group. But if he can't come for a few months that is okay too, to give it time and see how it goes. Falls and other complications do cause members to drop out and that is an inevitable part of life. I just hope that this set-back is a temporary one for Ray.
  20. swilkinson
    Winter is coming, fast now as officially it starts here on 1st of June. So traveling 150 miles further south meant it was wetter, colder and windier and I so missed the warm weather that we enjoyed when visiting our daughter and family when she lived in Cairns, 1700 miles north and SO much warmer in winter. But I enjoyed visiting her and her family for a week even if the weather was less than co-operative.
     
    What did I do? I showed off my skills as a sales woman on the Trash and Treasure stall at their church market day on the first Saturday I was there, far outselling the amount raised by the first one. I enjoyed walking the kids to school of a morning and hearing them thunder up the stairs of an afternoon and hearing what they did at school each day. I went to the school and saw the movie of the country camping trip my grandson had been on the previous week, he is shy and was always only just visible up the back of the group. We are proud of him anyway.
     
    I enjoyed walking with Shirley or her husband with their two dogs and the grandchildren just on dusk. I had promised a friend I would go for a walk every day and I did except for two days when the wet, windy weather got to me and I thought it was not worth the effort. And on a couple of mornings when the sun was out I sat out on their front verandah and knitted while their cat pretended my wool ball was a mouse and made a mess of it. Just sitting and doing nothing is a novelty now.
     
    We went out to dinner twice and had fun doing that, it was really nice to just eat without having to cut up a meal first. I love my daughter and her kids and know that the only thing I can give them is my time, not as often as I would like to for sure but realistically maybe twice a year with Ray and another twice by myself. Without Ray as a distraction I can give everyone else more attention and as a family we do need some
  21. swilkinson
    Ray and I went to the neurologist this afternoon, he goes every six months. The neurologist said his patient number is 1061 and the practice is now up to 21000 so he has been seeing him for a long time. In fact he has been going there since the 1990 stroke with a break of a few years before the 1999 ones and every six months since.
     
    We got there twenty minutes early, which was great as we saw a familiar couple walking out, and it was one of Ray
  25. swilkinson

    becoming Bunny

    By swilkinson,

    We are enjoying the last warm days before autumn turns to that colder period that heralds winter. I have loved the last week with its mild days and cool nights. It is good weather for Ray to be out on the verandah and for me to be in the garden in front of the house pulling up weeds and tidying the place up, it is good to feel the weight of blankets and snuggle in at night and yet still be out and about in the afternoon in a short sleeved top and skirt, feeling like summer still lingers.
     
    On Thursday I had my hair cut, it is short and shaped as I got sick of it being squared off at the ends. This is a style cut I have had many times before but this time it looks different, maybe because more of the gray shows and that is the predominant color now. I went past a shop window and saw my reflection and the word